February 9^th Nicole had her MRI today. The preliminary results were pretty much as expected. The tumor on her brain stem doesn't appear to have grown since the last scan. But it has increased in density. We will get the Radiologists report in a few days.
The brain tumor board will meet to discuss her case and will let us know what their recommendations are.

After much discussion it was decided to start Nicole back on chemotherapy. Even though we sort of expected this. It still shook us.
What keeps us going is the fact that we are confidant that God is watching over Nicole and that he is watching over our family, her doctors and nurses.
This week, Nicole will start 52 weeks of Vinblastine. We will have a "Half way party" after the 26th dose and a "No more chemo party" when she is done with her chemo. 

March 9^th  Well. After a short delay, Nicole had her first dose of Vinblastine. so far she has tolerated it well. Just a bit tired the next morning.
This could be from the chemo or from the long day we had. (Chemo Countdown 1 Down 51 to go) 

March 16^th Nicole's counts were good so she had chemo today. (Chemo Countdown 2 Down 50 to go)

March 18^th Nicole had surgery to install her new vena port. She did fine.

March 22^nd Nicole had some dental work done by Dr Krauspe. She did a great job.

March 23^rd Nicole's counts were good so we had chemo today.  (Chemo Countdown 3 Down 49 to go)

March 24^th Nicole had another dentist appointment. Boy she has an awesome smile.

March 26^th The Elburn Lions Club sponsored us to go to the "Someone Special Awards" hosted at the Drury Lane Theater by the Oak Brook Terrace Lions Club. We saw the play Pinocchio and we all had fun. Especially Nicole. I love to see her smile.
THANK YOU so much for allowing us the honor to attend.
Nicole had a busy week, and is tired. (But happy)

March 30^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 4 Down 48 to go)

April 5^th Mom had eye surgery today  

April 6^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 5 Down 47 to go)

April 9^th Today we buried a friend. Our Pastors wife Beverly Beckman had the NF just like Nicole, and had recurring brain tumors like Nicole's.
Pastor Beckman and his wife helped us tremendously through everything we have gone through. Without the support and love from the Beckman's we don't know how we would have made it.
We are thankful that Bev is at peace now. But we will still miss her tremendously.

April 13^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 6 Down 46 to go)

April 20^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 7 Down 45 to go)

April 23^rd While we were on our way to pick up parts for mom's car, the fuel pump went out on the van. Just what we needed, another expense. 

A special thank you to Mike and Donna Nelson from Mike Nelson & Family Trucking for helping us with driving Mom home to get her car and helping with the tow. It is people like Mike and Donna, who restore our faith in society.

April 26^th Nicole's mom had a minor fender bender this morning. The stress of everything is taking a toll on everyone. I am thankful that the person she bumped is understanding. 

April 27^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 8 Down 44 to go)
We are pleased with how well Nicole is tolerating the chemo. The big test will be next week when Nicole has her MRI. We keep in mind that this drug has  shown good results with her type of tumors.

April 29^th Dad was unable to get the night off to attend the Gus Foundation's Corporate Challenge 
to help raise money for Brain Tumor Research at Children's Memorial Hospital in Chicago. Unfortunately Mom cannot drive at night due to her eye problems. Nicole was disappointed, but says she understands. We are looking forward to next years event.

May 4^th Today was a big day. We had Nicole's MRI and we are waiting for the results. Her counts were good so we had chemo today.  (Chemo Countdown 9 Down 43 to go) 

May 11^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 10 Down 42 to go)
The MRI results showed that her tumors were stable (not growing). We were disappointed to hear that, but Dr Goldman assured us that this is expected and he is pleased with Nicole's progress. So... With that news we are happy.

May 18^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 11 Down 41 to go)

May 25^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 12 Down 40 to go)

June 1^st Nicole's counts were good so we had chemo today.  (Chemo Countdown 13 Down 39 to go)

June 8^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 14 Down 38 to go)

June 15^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 15 Down 37 to go)

June 22^nd Nicole's counts were a little low so we had lower dosage with her chemo today.  (Chemo Countdown 16 Down 36 to go)

June 29^th Nicole's counts were a little lower good so we had lower dosage with her chemo today.  (Chemo Countdown 17 Down 35 to go)
Nicole is excited to be going to One Step at a time camp again this year. 

July 6 ^th Nicole's counts were good so we had chemo today.  (Chemo Countdown 18 Down 34 to go)

July 7 ^th Dad, Nicole, Michael and Samantha Drove up to Coachman's Terrace RV Park and set up camp for the week.

July 8 ^th Mom drove up after she got off of work Her boss was nice and let her Start work early so she could get off work earlier.

July 9 ^th  Our family spent some quality time together before we drove Nicole to One Step at a time camp in the afternoon.

July 10 ^th Our family attended "Celebrate the children" at  One Step at a time camp We sang songs, met friends, made new friends and remembered friends who are no longer with us.

July 12 ^th Dad drove home tonight so he could go for his CPR instructor Re-Certification at 8:00 AM tomorrow. Mom Michael and Samantha spent some quality time together.

July 13 ^th Nicole had chemo at camp today.  (Chemo Countdown 19 Down 33 to go)  Dad returned to camp this afternoon and Mom went home to get some things done.

July 14 ^th Dad, Michael and Samantha drove home today and now it is time to catch up on things around the house.

July 20 ^th Nicole had chemo at camp today.  (Chemo Countdown 20 Down 32 to go)

July 23 ^th Michael, Samantha and dad picked up Nicole from camp today.  On the way home we went to Delnor hospital where mom works and had lunch with mom.

Nicole had a terrific time at camp. She had a million stories. And made a ton of friends. You know it is the times like this that we will treasure forever.

July 24 ^th Due to a miscommunication,  I had to give Nicole her Lupron shot at home today. 8 days late. it was due on July 15th and must be given every 28 days. I guess I should have driven up there and given her the shot myself.

July 25 ^th Nicole, Michael  and Samantha started Vacation Bible School today. They love it. 

July 26 ^th Dad had an accident at work today a young lady tried to make a turn too fast on wet pavement and hit his new squad almost head-on. Other than a bit of seat belt torque causing a stiff lower back for a couple of days, dad was fine. Angry but OK. 

July 27 ^th Nicole's counts were good so she had chemo today. She also had her Pentamidine infusion today.  (Chemo Countdown 21 Down 31 to go)

July 29 ^th The kids had a lot of fun at VBS this week. Dad volunteered on Thursday and Friday. Dad said he had a great time as well.

August 3 ^rd Nicole's counts were good so we had chemo today.  (Chemo Countdown 22 Down 30 to go)

August 10 ^th Mom had another surgery on her eye this morning. Dad took the opportunity to have Nicole's blood drawn at the lab to save some time.  Nicole's counts were good so we had chemo today.  (Chemo Countdown 23 Down 29 to go)

August 12 ^th Nicole had an appointment with Dr Laskey at Children's Memorial. Nicole's vision improved slightly in her Right eye and everything else appeared stable with her eyes. 

The hospital lobby was packed due to a 36-hour Radiothon hosted by Eric and Kathy of 101.9 the Mix FM an awesome Chicago radio station. These great people are raising money to help Children's Memorial care for children even if their families cannot pay.

12 days till Nicole's MRI we are feeling the stress building in anticipation of the MRI. Of course we pray that the MRI will show no tumors, but we will settle for a reduction in size. All we ask for is no tumor growth or new tumors.

August 17 ^th We did not go to Children's today. Dad made a promise to complete a project and got to sleep at 3AM. Dad says: "I might not have any money. But I still have my word" Anyway, with the extra hours and doubling back at work (dad is grateful for the overtime). Dad was exhausted and decided it was not worth the risk of falling asleep behind the wheel during our 60 mile trip to Children's. In the past we have gone and dad has napped in the van at Children's but he said he didn't think he could have made it there. Anyway Nicole had an appointment with Dr Habiby at Children's which was rescheduled. And we were able to get the home nurse to come and give Nicole her chemo at home. Nicole's counts were good so we had chemo today.  (Chemo Countdown 24 Down 28 to go) (Almost Half-Way !!!!)

We spent the evening in South Elgin, Illinois where they held their "Special Night for Special Kids". These kind-hearted people open the South Elgin Riverfest up for families of special needs kids and provide free entertainment, rides and food. We want to thank everyone involved in this event. It allows "People like us" who don't have festivals and carnivals in our budget. To have a fun evening out. We left when the sun went down to avoid the mosquitoes, even though I haven't seen many this year, even when I am working during the night.

7 days till Nicole's MRI we are feeling the stress building in anticipation of the MRI. Of course we pray that the MRI will show no tumors, but we will settle for a reduction in size. All we ask for is no tumor growth or new tumors.

Things are falling into place and moving forward in the sale of our home. We wanted to stay in the house, but with everything that has happened we decided it was best to sell the house. This should take a lot of pressure off of us.

August 18 ^th Nicole had an appointment with Dr Erickson in Carol Stream, to decide what we should do about the numerous extra teeth she has. From the looks of the Panoramic X-ray, the tooth fairy better take out a loan. Dr Erickson will talk to Dr Goldman and Dr Krauspe and will let us know what our options are. At this point it looks like it would have to be at least four surgeries to complete the job.

Dr Goldman spoke very highly of Dr Erickson and we felt very comfortable with Dr Erickson.

Dad was pleased with Pharmacy Solutions aka Tap Pharmaceuticals today. Customer service representative Denise was very helpful in coordinating between insurance companies and helping to calm dad's nerves. 

August 19 ^th  Today was a very busy day. Nicole had the honor to ride on the Elburn Lions Club float during the Elburn Days Parade. Michael and Samantha were in the parade as well. They were there with the Scouts. Dad really knows how to spend his birthday, he spent the time sweating while directing traffic and crowd control during the parade. 

August 23 ^rd  We signed the lease for our house today and registered at our new schools.

August 24 ^th  Michael and Samantha had their first day at their new school. Nicole had her MRI. An unofficial look shows reduction in tumor size. Although we won't get too excited until the radiologist report is complete.  (Chemo Countdown 25 Down 27 to go) (Almost Half-Way !!!!)

August 25 ^th  Nicole had her first day at her new school. We are so happy to have her back in the Burlington school district. She was so excited to be back and couldn't wait to tell us about her great day. Michael and Samantha absolutely love their new school. 

The fact that the kids love their new schools takes a lot of stress off of us.

August 31 ^st  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to work with her and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse was nice and met dad at school where she gave Nicole her chemo in the school nurses office. Our thanks go out to the staff at Burlington Central Middle School for allowing us the opportunity to give Nicole her chemo in their school nurses office. {We hope to try to keep Nicole's life as close to "normal" as possible}. This was the first time giving it to her at school and the hospital lab forgot to fax the blood counts to Children's Memorial so we had a slow start and ended up giving her the chemo at the end of the school day. I am sure that the next time we will be closer to 1PM which is what we had hoped for. 

 (Chemo Countdown 26 Down 26 to go) (Almost Half-Way !!!!)

After school aunt Sheliah and uncle Andy, who are visiting from Florida, stopped by and visited us at our new home. Everyone had a great time. 

September 1 ^st  The Kaneland bus which would have picked up Nicole to take her to school, if she had gone to Kaneland this year, was involved in a crash this morning. We are thankful that nobody was seriously hurt. This would have surely necessitated a trip to Children's.

September 2 ^nd  We had a meeting at Nicole's school to assess Nicole's needs. We were impressed at the "Team" approach. Which will be necessary to help Nicole achieve her goal.

September 5 ^th  Dad spoke with Dr. Goldman today regarding the latest MRI results. Dr Goldman stated that even though they look smaller, he would not want to say until we have the next MRI to see if they are smaller in that MRI as well. He doesn't want to give false hope or expectations 

September 7 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met mom and dad at school where she gave Nicole her chemo in the school nurses office. Again Our thanks go out to the staff at Burlington Central Middle School for allowing us the opportunity to give Nicole her chemo in their school nurses office. {We hope to try to keep Nicole's life as close to "normal" as possible}. As we expected things went smoother this time.  

 (Chemo Countdown 27 Down 25 to go) (We made it Half-Way !!!!)

We decided that since we are in the process of moving. We will have the Half Way party once we are moved in completely hopefully on October 8th

September 14 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 28 Down 24 to go) 

September 21 ^st  Nicole had her chemo at Children's today. Her counts were good so she got her full dose of chemo today. Nicole also had her Pentamidine infusion. (Chemo Countdown 29 Down 23 to go) 

September 28 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 30 Down 22 to go) 

October 5 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Dad took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 31  Down 21 to go) 

October 8 ^th  We had Nicole's "Half Way party" today at Chuck E Cheeses. Nicole had a blast including a special visit from Chuck E Cheese himself. He gave Nicole a large Chuck E Cheese doll and posed for photos. And of course Nicole gave him a GREAT BIG HUG. 

October 12 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Dad took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 32  Down 20 to go) 

October 19 ^st  Nicole had her chemo at Children's today. Her counts were good so she got her full dose of chemo today. Nicole also had her Pentamidine infusion. (Chemo Countdown 33 Down 19 to go) 

October 26 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 34 Down 18 to go) 

November 2 ^nd  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 35 Down 17 to go) 

November 9 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 36 Down 16 to go)

November 15 ^th    Nicole had her MRI today. Nicole is soooooo proud. She laid still for her MRI and did not need sedation. We are proud of her.

The tentative results are Stable. No growth but no appreciable shrinkage of the tumor on her brainstem.

November 16 ^th  Nicole had her Pentamidine infusion at Children's today. Her counts were good. During Nicole's Pentamidine infusion, she passed out and her lips turned blue. When she woke up she was confused and disorientated. They are running tests to see what the cause is.  Due to this incident they withheld her chemo today. The ECG was abnormal so Nicole will be spending the night at Children's to monitor her. 

November 17 ^th  Nicole was fine all night and day. She was released this afternoon. We have no answers as to why this happened. We will be monitoring her closely. Dr. Goldman felt that it would be best if we withheld her chemo this week. Even though she didn't receive treatment this week the count is now: (Chemo Countdown 37 Down 15 to go)

November 18 ^th  Nicole slept thru the night and seemed ok all day. Mom decided that she would feel more comfortable if Nicole stayed home from school today so we could monitor her more closely.

November 23 ^rd  Dad accessed Nicole's venaport and drew a blood sample this morning. Her venaport was clogged up and it took a bit of work to get it going (we got lucky this time. Her vena-port had been locked with 10 unit Heparin instead of 100 unit ).Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 38 Down 14 to go)

November 30 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Her venaport was fine. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met mom at school where she gave Nicole her chemo in the school nurses office.  (Chemo Countdown 39 Down 13 to go)

December 7 ^th  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at Home where she gave Nicole her chemo.  (Chemo Countdown 40 Down 12 to go)

December 14 ^th  Nicole received her chemo at Children's Memorial today. She was surprised when Mark Staehely, a Cancer Warrior, played Santa and brought Christmas presents to the kids in the Oncology units. Nicole was on Channel 5 news and on Channel 7 news. Thank you Mark! (Chemo Countdown 41 Down 11 to go)

December 21 ^st  Dad accessed Nicole's venaport and drew a blood sample this morning. Mom took the blood to Delnor Hospital and dropped it off at the lab. Nicole's counts were good so she got her full dose of chemo today. The home nurse met dad at Home where she gave Nicole her chemo.  (Chemo Countdown 42 Down 10 to go)

December 24 ^th  We had a special visit from Santa this evening. Nicole enjoyed the special attention. Michael & Samantha were overjoyed as well. Dear Santa, Thank you for making the special trip and we are glad you are feeling better.

December 27 ^th  Today Nicole had oral surgery at Children's. Dr. Erickson removed 8 upper teeth. {The tooth fairy almost had to take out a loan} This is the first of several surgeries to remove the numerous extra teeth she has. The rest of the surgeries will likely wait till after she completes her chemo. They really didn't want to do the surgery while she was in treatment. But she was complaining of discomfort. Again. Children's proved that it is the best hospital. A mysterious caregiver, who remains anonymous,  left 5.00 from the tooth fairy. {Thank you}. Nicole did so well, Dr Goldman and Dr. Erickson said she could go home instead of staying at the hospital. Dr. Goldman felt it would be best to withhold Nicole's chemo this week so as not to stress her.  (Chemo Countdown 43 Down 9 to go)

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As always Please keep Nicole in your prayers

They really DO work!

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